Dr. St. Peter just called this afternoon (yes, on a Sunday!), so we've got answers to our questions. I won't go over them all, but here's the gist of the conversation...

On August 14th, he will be removing the lower lobe of Kristen's right lung. There's a natural division between the lobes, making it much easier to separate the lung at that point. We all have 2 1/2 times more lung capacity than our hearts can keep up with, so the removal of this lower lobe should be no problem for Kristen later in life.

The surgery will take about 3 hours and will require 4 incisions: a 5 mm incision for the camera, 2 "stab" incisions for the left and right hands to work through, and another 5 mm incision for the retractor. The 5 mm incisions will require a stitch or two inside. These will absorb and not have to be removed later. The stab incisions are so small that they won't need stitches at all.

Once we're done with the surgery, we shouldn't ever have to go back for a scan or followup related to this sequestration. The lesion is anatomically contained, so once it's removed, it's done.

Dr. St. Peter has operated on a baby as young as Kristen and is comfortable going ahead with this now, as opposed to waiting another 3 months and risking an infection in that lung. An infection would seriously complicate the operation. And I must have misunderstood him when we met right after Kristen was born. He does about 2 of these operations a year (sequestrations and CCAMS are quite rare).

For now, we're doing okay with all of this. That may change (for Mommy at least) as it gets closer! Our prayers are for peace about the operation, safe travel to KC and back, and that the doctors and nurses who care for Kristen have the skills and compassion they need to provide the best care possible.

As we've said before, we truly appreciate all of your prayers and concern. God cares for us in so many ways, and one of the most special ways is through the love of family and friends. Thank you, and God Bless!

Kristen's surgery is set for August 14. She has to go in at 3:00 p.m. the day before for a pre-anesthesia work up. We don't know the exact time of her surgery yet, but it will be one of the first of the day (they stack them according to age, and she will most likely be the youngest).

I've got a list of questions for the surgeon, who is supposed to call me back. When he called last Friday, I was driving and couldn't write anything down. Dr. St. Peter said he'd be happy to talk with us any time. The trick is trying to catch him!

Kristen is full of smiles and coos these days and is very good a rolling over (both back to tummy and tummy to back). She's also sleeping about 6 hours most nights (yeah!). We appreciate the continued prayers and look forward to having all of this behind us!

Well, it's not the outcome we'd hoped for, but we have the results of the CT scan. It's not a CCAM as they originally thought, but rather a pulmonary sequestration. I've added some links in the "Resources" area of this site; they explain it better than I can. After talking with both the surgeon at Children's Mercy (the one who ordered the scan) and our pediatrician here, I understand a sequestration to be similar to a CCAM in that it's non-functioning lung tissue. They differ, however, in that a CCAM is generally cystic and does not have any blood vessels feeding it, while a sequestration does have blood vessels attached. The scan report very plainly stated that there were blood vessels present in the lesion, which measures about 2.5 x 1 x 1 cm. It's not large and is not interfering with Kristen's breathing at all. This one is not attached to the airway, though some of them can be.

Even though she's having no difficulties, the sequestration needs to be removed. If it is not removed, there is a chance it will become malignant later in life. Because of the blood flow through the lesion, it can also cause circulation and heart problems.

As long as she has no respiratory infection, the sequestration can be removed thoracoscopically (minimally invasive). If she gets an infection, it becomes much more difficult to remove the lesion and would most likely require opening up her chest.

The prognosis seems quite good after surgery, and this surgeon has performed many of this type of operation. We still have to schedule it, but will most likely be looking to have this done mid-August. Kristen will be about 3 1/2 months old at that time, and we'll still be ahead of the time of year when she would be more likely to get a respiratory infection.

Our faith is not wavering...we know God is in control of the situation and will bring us through it! He has given us a beautiful baby and shown us His mercy time and time again since her arrival. We thank all of you for your continued prayers!

Just winding down from a long day today. We arrived at CMH at 7:30 this morning for Kristen's CT scan. Everything seemed to take forever! They started with applying lidocaine to her arms and ankles (to numb possible sites for the IV) and ended up having to stick both of her little arms. Ouch! They did end up sedating her because they needed to slow her breathing for the best possible picture. We were with her while they put the IV in, but the nurse took her away for the sedation, contrast and scan. We had to wait about 45 minutes and got to see her again when she was waking up. Poor little baby was so groggy, but she did great. A radiologist confirmed that it was a good scan, but we won't know the results for a couple of days.

I fed her before we left Radiology at 10:30 (she hadn't been allowed to have any milk since 4:00 a.m.). She was hungry, but so sleepy! After some lunch and a quick stop to see Will's older sister, we headed home. The trip took an extra hour and a half. Kristen was hungry, but still sleepy, so she'd eat a little, then fall asleep and wake up an hour later hungry again. We stopped three times to feed her!

We're all glad to be back home from a very quick trip. Kristen went to bed about 10:00 tonight, which is early for her. She stayed up longer than her sisters or her daddy...we're all pretty tired. I'm going to sign off and head to bed myself. We should know something by noon on Friday...

Just a quick update today...Kristen is 2 months old! Her 2 month check up went well. She's up to 9 pounds (10th percentile) and is 21 3/4" long (25th percentile). She's been able to wear some of her 0-3 month clothes without completely drowning in them and we've graduated to size 1 diapers. (They have PLENTY of room, but the newborn diapers were getting a bit snug.)

She also had 2 shots this afternoon, so she's not exactly happy at the moment. Her sisters got suckers at the doctor's office, and Kristen got shots. I think she got the short end of that stick!

We leave next Tuesday (July 14th) for Children's Mercy in KC. Kristen will have a physical at 1:30, then return the next morning at 8:00 a.m. for her CT scan. We believe that the results will confirm that she is perfectly healthy! We pray that the confirmation will be a testimony of God's healing and that her story will make a difference in the lives of many. Please pray for a safe trip for us and that Kristen does well with the test preparation (she's only allowed to have Pedialyte--no milk--after 2:00 a.m. on the 15th). Thanks, and we'll keep you updated!

Our sweet Kristen...

Inspiration

"Blessed be the Lord, Who bears our burdens and carriesus day by day."-Psalm 68:19

This verse was the inspiration for the bears I began knitting a few months after Kristen died. The knitting itself is therapeutic for me. I think, I pray, I listen to God as I knit each stitch. He truly does bear my burdens and carries me (sometimes it's minute by minute). A bear seemed like a wonderful reminder.

My Prayer

If you have found your way here because you received a bear, then this prayer is for you...

May God continue to grant you the grace necessary to get you through this very difficult journey. Our paths to get here may be different, but there is no denying the incredible pain that accompanies each of us. Lean into the One who created you, the only One who truly understands your pain and your heartache. He will love you through it...IF you let Him. I pray that you will.